In 2013, we brought you the story of Jason and Susie, two courageous patients who had undergone implantation of left ventricular assist devices (LVADs). Sadly, Jason has passed, but Susie continues to thrive. 


Just to review, a "ventricular assist device (VAD)" is a mechanical pump that is connected to the heart in order to support its function. The type of device that would be considered in individuals with Duchenne/Becker is a "left ventricular assist device (LVAD)". It works by assisting the ill heart in pumping blood from the left ventricle to the body. VAD therapy may be used as a "bridge to transplant" (implanted after the heart is too weak to support the body and left in place until a donor heart for transplant is found) or as "destination therapy" (which means that the device is implanted in an individual who is not a transplant candidate with the intent that the device will be in place for the remainder of their life). In Duchenne, VADs are generally placed as destination therapy.


In August of this year, Susie had a serious scare with her LVAD. Many watched Facebook, holding their breath, following her progress. Here is her story:

After my LVAD was implanted a year ago, I was prescribed Coumadin (warfarin). Coumadin and heparin are both anti-coagulants or “blood thinners.” Both drugs can be given to treat conditions such as thrombosis and embolism, and, as in my case, are given to patients with LVADs to prevent blood clots from forming inside the LVAD pump. It was important that I never miss a dose of Coumadin and that I have regular blood tests to monitor my Coumadin level (to make sure that I’m not getting too much, which could cause bleeding, or too little, which could allow clots to form). I have to say, I was a great patient – I had never missed a dose of medication and had been attending my Coumadin clinic appointments on time. 


On August 11, 2014, I noticed that I had cola colored urine. Concerned, I called the hospital and went to our local emergency room. At first the medical team did not know whether this was a urinary tract infection, internal bleeding, or worse – a blood clot in my LVAD (Left Ventricular Assist Device). In the emergency room, labs were drawn that indicated the presence of an active clot and hemolysis, which is a breakdown of red blood cells. In addition, the pressure inside my LVAD was slightly elevated, which meant that it was overworking. Something needed to be done immediately.


I couldn’t have been more surprised – I felt fine and had no other symptom other than dark colored urine!


From the local emergency room, I was flown to an Oregon hospital, a larger institution capable of treating an LVAD patient. Immediately I was connected to an IV drip of heparin, and given maximum doses in an attempt to dissolve the suspected blood clot inside the LVAD pump. I had CT scans, Chest X-rays, and an echocardiogram with contrast – everything looked fine. They could not find any evidence of a clot, or any twisting or kinking of the LVAD wires inside my chest. While they could not see it, the presence of a clot was confirmed through blood tests, increased levels of liver enzymes (they were more elevated than they had been), and the increased pressure inside the LVAD. I stayed in the hospital for several days, letting the heparin work to dissolve the clot while the team kept an eye on the functioning of my LVAD. Thankfully, the heparin worked! The clot dissolved and the LVAD was not harmed in any way. After about 4 ½ days in the hospital I was released to go home. I have been home now for a few weeks, and I am doing just fine.


LVAD implantation has some rare, but serious risks, one of which is blood clots. Blood clots may form as blood moves through an LVAD pump, which can slow or block normal flow through your heart. This can cause the LVAD to not function properly. Blood-thinning medications are taken to reduce the risk of clotting also increase your risks from dangerous bleeding. It is important to manage and prevent this is by going to a Coumadin/anticoagulation clinic to get Coumadin blood levels checked regularly.


This was a very scary experience, but fast action is key!  It was important for me to know when something was wrong, to be in tune with my body, and to go to the Emergency Room as soon as I felt something was not right.


I am very thankful for this device. Because of the LVAD I’ve been able to have two extra birthdays, attend my brother’s wedding, and return to school. I have a great quality of life.

Blood clots are only one of the significant risks associated with ventricular assist devices. Others may include:

  • Bleeding – this may require re-operation and is a common occurrence
  • Stroke (both hemorrhagic and ischemic)
  • Infection
  • Arrhythmia
  • Respiratory failure
  • Kidney failure
  • Liver failure
  • Hemolysis (break down of red blood vessels)
  • Blood clots within the pump
  • Re-hospitalizations
  • Development of right sided heart failure or air embolism during surgery


While everything possible is done to prevent these risks, both during and after surgery, it is important that patients do everything that they are prescribed to do, in order to minimize risks – just as Susie did. 


PPMD had published much information regarding the use of ventricular assist devices in Duchenne:


LVADs are not perfect, and they certainly are not for every patient. But, thankfully, they are now available for appropriate patients and are being implanted by competent surgeons at reputable, capable institutions.

PPMD will continue to bring you up-to-date information regarding novel therapeutics in care and to address questions and concerns as they arise. There are many developments on the horizon – we hope that they will benefit many, many patients, just as this one has benefited Susie.

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